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MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow - Hydrocephalus, Empty sella, etc
Posted: 13 September 2013 11:37 AM   [ Ignore ]  
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Below is a copy of the mid sagittal section of one of my MRI’s.  It clearly shows the many issues that are caused by the excess Cerebro Spinal Fluid, that accumulates within our skull.  I just thought I would submit it, so that it can be used as a comparison for those who have obtained copies of their own MRI’s and for anyone out there in Medical World who gives a damn!

Note: this MRI was taken in a leading UK hospital and NONE of the issues were mentioned in their report!!

Regards
Barbara
(UK)

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Posted: 16 September 2013 09:22 PM   [ Ignore ]   [ # 1 ]  
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Cool! thanks Barbara!  They called my MRI normal for the most part too, and my images are very similar.  Unfortunately, they did not get a good picture of the pituitary gland. The images just skipped through that layer.  I will be starting Diamox soon.  Can’t wait for some relief.  I don’t even remember what it is like not to have a headache and pressure.
Shonda

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Posted: 18 September 2013 08:07 PM   [ Ignore ]   [ # 2 ]  
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Hi Shonda,
I’m sure you’ll improve once on Diamox. It helped with the eye pain, the pressure behind the eyes, the vertex (top of head pain) the throbbing image (or lacy overlay) and the tinnitus. I hate taking tablets but this is one I’m glad to take (though I do have to break them into pieces!). My philadelphia collar had already gotten rid of the occipital pain, the neck pain and shoulder pain, so if you have that, I can empathise with you, it wears you down. 

I had some good news yesterday from the Neuro-opthalmologist, there’s no longer any disk swelling - yippee, I’ve been on Diamox for a year now, so it’s definitely working.

My MRI above was taken in 2010, it would be interesting to see what it looks like now. Glad you found it useful, I think it always helps if you have an image to compare your own to.
Regards
Barbara
(UK)

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Posted: 19 September 2013 07:10 PM   [ Ignore ]   [ # 3 ]  
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Hi Barbara,
It is nice to have for sure.  I am looking forward to starting on Diamox.  Pain of any type wears one down, and just getting rid of one pain would be nice.  Dr. Diana has said that she does not have to take Diamox as frequently anymore.  She takes it now only when she has a flare up.  Will that be something you will do too?  Do you still monitor your CO2 levels?  How does in work England?  It is very impressive that your swelling has gone down.  Are you able to get around better?
Shonda

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Posted: 19 September 2013 07:17 PM   [ Ignore ]   [ # 4 ]  
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Forgot to say:  that seeing other EDSers with the same symptoms and same MRIs proves that we have the EC hydrocephalus.  Maybe soon doctors will stop missing it!  Think of how many lives would made better!

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Posted: 19 September 2013 07:19 PM   [ Ignore ]   [ # 5 ]  
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Also, if you ever have another MRI please post the findings.

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Posted: 20 September 2013 09:49 AM   [ Ignore ]   [ # 6 ]  
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Lab-Scientist-Lady - 19 September 2013 07:10 PM

Hi Barbara,
It is nice to have for sure.  I am looking forward to starting on Diamox.  Pain of any type wears one down, and just getting rid of one pain would be nice.  Dr. Diana has said that she does not have to take Diamox as frequently anymore.  She takes it now only when she has a flare up.  Will that be something you will do too?  Do you still monitor your CO2 levels?  How does in work England?  It is very impressive that your swelling has gone down.  Are you able to get around better?
Shonda

Just a quick reply,
Pain control, I could go on forever about this because I have had so many different pains, all which have to be managed in their own unique way.  I say that because general pain-killers do little to relieve it, so I had to look for other cures, or ways of management.  One thing that did bring quite a lot of relief was taking effervescent Vitamin D twice a day, it converts in the body into quite a powerful hormone and, due to todays lifestyles, many people are lacking.

Diamox, I have to keep taking 2 x 250mgs tablets a day. Once I’m certain that my raised intracranial pressure (ICP) is less volatile, I might experiment in cutting it down but I’d have to be certain because untreated ICP can cause such devastation.

It’s been difficult getting my CO2 levels monitored in England, they only seem to take heed of the Potassium, despite my constant reminders. Most of my vitamins are effervescent (carbonated) so I rightly or wrongly assume I will be getting a fair bit of Bicarb. If I’m feeling particularly thick-headed I just take Bicarb in water but this is just every once in a while. 

Am I able to get around better - I wish! but there’s more going on here and I’m working at it all bit at a time, one day the answers will come.
Regards
Barbara
(UK)

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Posted: 20 September 2013 11:02 AM   [ Ignore ]   [ # 7 ]  
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Lab-Scientist-Lady - 19 September 2013 07:17 PM

Forgot to say:  that seeing other EDSers with the same symptoms and same MRIs proves that we have the EC hydrocephalus.  Maybe soon doctors will stop missing it!  Think of how many lives would made better!

Yes, here’s hoping one or more such doctors reads this. There’s such a shortage of knowledge out there (and a gross shortage of experienced Neurologists), so doctors are left with a bit of a dilema, they have a patient to treat with many symptoms and not a clue what the root of the cause is, or how to help them.

Here’s my take on it.  At some point there will have been an ‘initiating event’, some like myself describe head trauma (sometimes long before symptoms manifest), some like Dr Diana describe a virus as the triggering event but whatever it was, it will have made the brain swell. Now as the skull is a rigid container, anything swelling inside will have to find space to swell into, which is usually the hole at the bottom of the skull, where the spinal cord comes through.  So the bottom of the cerebellum (the hind-brain) herniates and starts to peep out of this opening.  Normally this space is occupied by Cerebro Spinal Fluid (CSF), passing freely between the head and the neck.

Once the hind brain takes up this space, it starts acting as a ‘bung’ and blocks or restricts the free flow of CSF.  This ‘blocking’ of normal CSF flow, additionally leads to a build-up of CSF around brain, sometimes referred to as Cerebral Edema, or Hydrocephalus, which raises intra-cranial pressure. When the pressure becomes raised in the intra-cranial space, all sorts of problems are caused. 

It’s now harder for the heart to get oxygenated blood into the brain, so it either has to beat faster (causing tachycardia) or harder (causing high blood pressure), both are undesirable for any length of time.  If these two mechanisms fail, the brain starts to malfunction further.

A secondary problem is that, over time, the raised intracranial pressure causes the CSF to invade the Sella (or Sella Turcica). The Sella Turcica is a special little bony chamber, in the middle of the base of the brain, which is there to protect the Pituitary Gland. This is a very important, cherry shaped gland, which is the master control for the endocrine system, which deals with all kinds of essential hormones. In it’s early stage this invasion is referred to as ‘Partially Empty Sella’ as the pituitary gland becomes compressed but usually still works - however, it is a warning of things to come!  Once the pituitary gland is flattened, it’s often malfunctioning and probably will have been for a while. At this stage it is referred to, on MRI’s, as an ‘Empty Sella’, which is also shown on the MRI example above.  Few radiologists, or neurologists for that matter, appreciate the significance of this ‘medical sign’.

The raised ICP pressure can compress the Hypothalamus and Brain-stem too and contribute towards messing up the autonomic nervous system, which is the master control for major systems and the organs of the body - no wonder ours don’t work properly!!! Dysfunctional heartrate, blood-pressure, circulation, temperature, respiration and digestion all play real havoc with the body.

All this in itself is bad enough but, if you are then unfortunate enough to suffer a whiplash injury, that results in damage to the ligaments which hold the head on (at the cranio-cervical junction) - er, that’ll be me, then it’s a whole new ball game. Suddenly the head want’s to slide backwards and forwards (albeit only slight) but, if the piece of anatomy that’s in it’s path is that rogue piece of hind-brain, you’re heading for trouble, because directly in front of this is your BRAIN-STEM, get the picture ?  Worsening autonomic dysfunction, messages interrupted between brain and body.  Many, many intermittent symptoms, impossible to test for when not symptomatic and often earning the poor sufferer the label of ‘nutcase’.

I think people with the hypermobility type of EDS, whose ligaments are s-t-r-e-t-c-h-y may have an underlying, craniocervical instability too, which is allowing their head to subtly compress both their hind-brain and their brain-stem, as above.

Maybe what these people need are:-
    1) Something to stabilize the head (e.g. a Philadelphia Collar).
    2) Something to reduce the ICP (e.g Diamox or Acetazolamide).
    3) Something to help improve their Collagen production (Vit C, protein).
    4) Maybe something to help reduce any brain swelling (Antihistamine).
    5) Drugs necessary to support organs and systems that are not functioning properly:
              Maybe Zantac.
              Maybe Growth Hormone.
              Maybe Thyroid Hormone.
    6) Supplements of essential minerals (e.g Magnesium, Zinc, etc) and vitamins (e.g. multi B Vitamins, also Vitamin D) that have depleted through not being able to look after
    themselves properly, from being disabled indoors, or simply from having a digestive system that doesn’t work properly.
    7) Muscle massage to help with discomfort and improve functionality.
    8) Lymphatic drainage to aid a sluggish system and help speed up the process of getting rid of built-up toxins.
    9) Someone to help at home, to lessen the burden of pain and stress, whilst healing takes place.
    10) A diet including Magnesium rich foods, wherever possible.

Barbara
(UK)

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Posted: 11 January 2014 08:19 AM   [ Ignore ]   [ # 8 ]  
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I feel I need to elaborate on the Magnesium aspects here, first of all I have found studies linking hydrocephalus and Magnesium deficiency, please read the following post:-

http://prettyill.com/forums/viewthread/292/P30/#3476

so, is this involved somehow, for some people ?
Regards
Barbara
(UK)

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Posted: 11 January 2014 11:25 AM   [ Ignore ]   [ # 9 ]  
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Various drugs can contribute to Magnesium deficiency, many of these drugs we find ourselves on, due to the nature of our condition:-

      Painkillers, that many sufferers with Chronic Pain are taking for extensive periods of time
      PPI’s for gastric disorders, when taken for long periods (for GERD or sometimes given with Nsaids)
      Diuretics
      Anti-depressants which some sufferers might have been put on
      Certain types of anti-biotics also deplete magnesium levels

So consider, these could have put you into a ‘hypomagnesemia state’, over time. For further info on Magnesium Deficiency, please read:-

http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/
Barbara
(UK)

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Posted: 16 January 2014 01:06 AM   [ Ignore ]   [ # 10 ]  
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Thanks for posting this Barbara.

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Posted: 23 January 2014 05:25 PM   [ Ignore ]   [ # 11 ]  
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Lab-Scientist-Lady - 19 September 2013 07:17 PM

Forgot to say:  that seeing other EDSers with the same symptoms and same MRIs proves that we have the EC hydrocephalus.  Maybe soon doctors will stop missing it!  Think of how many lives would made better!

Yes, Dr Diana classes the hydrocephalus as ‘External Communicating Hydrocephalus’. The problem is, when radiologists are ‘looking’ for hydrocephalus, they look for enlarged ventricals, which of course we don’t have, usually. Our hydrocephalus is ‘Communicating’ i.e. free flowing, NOT BLOCKED anywhere, well not within the brain anyway. 

As you know, the only ‘blockage’ of the functional flow of Cerebro Spinal Fuid (CSF) is usually where the head meets the neck, when the lowest part of the hind brain, takes up residence above (or herniates within) the hole in the bottom of the skull, where the CSF needs to flow, to carry out it’s function along the spine. This hind-brain acts as a ‘bung’, which stops or hinders the natural flow of CSF and can allow a build up of pressure within the skull.

Additionally there is a blockage (or blockages) where the CSF would normally drain out of the skull, once having done it’s job.

Doctors say, ah well if this person may have raised intracranial pressure, we’ll order a lumbar puncture, to check it.  This procedure is really NOT RECOMMENDED, as the reduction of spinal CSF pressure can worsen any herniation of the hind-brain (as the pressure above it is higher). This can cause MUCH worse symptoms! The LP result is also a false result

So the problem is, how to measure intracranial pressure non-invasively. Well, I’ve toyed with things I’ve come across and I think there’s a way. It will certainly give a rough guide anyway. I remember telling Henry40 about it but I can’t find it on the forum, I’ll try and locate it - Watch this space!

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Posted: 23 January 2014 05:53 PM   [ Ignore ]   [ # 12 ]  
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Found it! In 2012 I came across a mathematical formula which said:-

  CPP = MAP - ICP

CPP is Cerebral Perfusion Pressure
MAP is Mean Arterial Pressure
ICP is Intracranial Pressure

CPP for an adult should always be maintained (range 70-90, below 70 leading to brain ischemia) so, based on further reading, I took the average of this as a constant (80) just to experiment and see what was happening to my ICP. So:-
CPP = 80

MAP was calculated by taking the Diastolic Pressure (DP) measurement of the blood pressure reading and, adding to this a third of the Pulse Pressure (PP).  The PP being Systolic Pressure minus Diastolic Pressure.
MAP = DP + (PP/3)

So if I knew those 2 measurements, I could work out (roughly) my ICP. 

Let’s take an example of BP 130/70 which would calculate the Pulse Pressure (PP) as 130 - 70 = 60.

The MAP calculation is the lower BP figure of 70 + a third of the PP of 60 (which would be 20) so 70 + 20 = 90.

We take CPP = 80

Now lets put this into the equasion to find out the ICP:-

  CPP = MAP - ICP
  80 =  90 - (in this case 10) which is a normal result

Have Fun,
Barbara

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Posted: 23 January 2014 06:05 PM   [ Ignore ]   [ # 13 ]  
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So what are normal ranges, well according to Wikipedia bear this in mind:-

ICP is normally 7–15 mm Hg;
at 20–25 mm Hg (the upper limit of normal) treatment to reduce ICP may be needed.

Lets look at another example
BP of 154/100,
PP 154 - 100 = 54,
MAP 100 + a third of the 54 (which would be 18), so MAP = 118

Now lets put this into the equasion to find out the ICP:-

  CPP = MAP - ICP
  80 =  118 - (in this case 38) which is raised intracranial pressure!!

Barbara
(UK)

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Posted: 24 January 2014 05:25 PM   [ Ignore ]   [ # 14 ]  
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Fascinating, Barb! I need to take a closer look at this… The equation is correct (did you see it in my slide from the Global Expo that Dr. Francomano and I presented? When I spoke at Dr. Sclafani’s conference, I was addressing doctors, so I flew through it, assuming they would understand and follow me… Nope! A few came up afterwards and asked for help, and a neurologist from Italy asked for a copy of the lecture. wink A famous engineer grabbed me, as HE knew what I was talking about!! I’d like to fiddle with your discussion a bit. I just wonder if our CSF pressure could change as fast as our blood pressure? It can swing wildly, after all… Thanks, Hon! wink

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Posted: 24 January 2014 07:11 PM   [ Ignore ]   [ # 15 ]  
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Dr. Diana - 24 January 2014 05:25 PM

I just wonder if our CSF pressure could change as fast as our blood pressure? It can swing wildly, after all… Thanks, Hon! wink

I was in the middle of a video diary, when I had an ‘episode’ where I went from feeling ok, to feeling bad, to feeling ok again.  During that episode I took BP readings which showed that when I was feeling BAD my BP was up, when I started feeling ok again, within a few minutes, the BP was nearly back to normal, so in answer to your question above, my experience is that YES they go hand in hand.
Barbara
(UK)

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